#60320 02-21-2007 05:14 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | So hee I am, two years out from the last time I had any known oral cancer (that is 2 years out from my surgery date, I did have rad and chemo after that despite having clean margins and nodes and that two year anniversary won
t be until the beginning of June. Two weeks ago I had a PET scan as part of normal follow-up (ordered by my ENT) and apparently it showed some "changes in the upper neck" from the one I had about 10 months ago. My ENT's nurse called and said he wants a chest CT and a neck MRI then when he looks over those I will hear more.
I'm trying not to panic. I have not asked to see a copy of the PET report because I figure it will just scare me more. I'm trying to remember that PETs are oversenstive and that about 4 weeks before I had the PET scan was when I had the surgery to remove the stent from my espohagus and maybe that caused the difference. Fortunately, I have an insanely busy work schedule for the next couple of weeks to distract me from this but I'm still so worried. I was finally feeling hopeful about eating well enough to get off the g-tube and looking forward to elebrating my 2 year anniversary. I don't know if I could handle learning that I'd had a recurrence.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#60321 02-21-2007 09:02 AM | Joined: Feb 2007 Posts: 176 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2007 Posts: 176 | Nelie,
I am certainly not a Doctor, but based on your extensive treatment it seems unlikely that you have a recurrence. My doctors told me (at a stage III) that if I make it thru the 1st 1 1/2 years (next week w/scans)I am probably home free. It is a horrible and helpless feeling that you have, but have some faith in your docs. You are probably ok.
All my best,
Rob J.
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
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#60322 02-21-2007 12:37 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Nelie, I read your post and I want you to know I am thinking of you and hoping it is not cancer again. I certainly understand how you are feeling....Take Care, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#60323 02-21-2007 02:19 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Nelie,
I hope and pray that the PET is just over sensitive as you say. I'm sure the CT/MRI will confirm that you are still cancer free.
Stay Strong
Tim
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#60324 02-21-2007 03:07 PM | Joined: Oct 2006 Posts: 248 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2006 Posts: 248 | Nelie, You have been through so much and no matter what the probabilities are we are all just one Dr's. sentence away from being changed forever. Hoping your dr's serntence brings you joy and happiness which you have fought so hard for.
Always, Mark
Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
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#60325 02-22-2007 04:39 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Neilie,
You've heard this before and you've probably posted this before....it's not cancer until they say it is....we have all had anxious moments like this and the vast majority turn out to be nothing. You can't do anything about it now anyway so forget about it until the next scan. At least push it as far back in the brain as possible.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#60326 02-22-2007 04:10 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Nelie,
Like everyone else, I hope this turns out to be nothing serious. I know it's frustrating to hear something as vague as "changes in the upper neck" without any real context to put it in. I've periodically had to have scans of that area because of symptoms I've felt, but so far (thankfully) they've turned out to be stuff that could be dealt with by PT -- some cervical spine compression and stiffness that may be a long-term effect of radiation, but right now I put it in the nuisance category.
I hope you get some clarification soon and that it turns out to be good news.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#60327 02-23-2007 02:32 AM | Joined: Mar 2006 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2006 Posts: 62 | Nelie,
When will your ENT schedule the tests and results. The hardest part is the waiting and the what if?. David is right- it isn't cancer til they say it is. You have been through treatments that are horrible and complications with your esopaghus that seem to affect only a very small % on this board.You have gone through this as the stong suvivor you will continue to be. This sucks big time.
paula
CG to gil stage 4b Bot,rt tonsil, 2lymph nodes, dx 11/05 finished tx 3/06 35 IRMT, 5 chemo, clean scans 2/07, stricture of esopaghus
caregiver to Gil dx SCC 11/05 T2N2M0
finished tx 3/10/06 stage 4 rt tonsil,BOT,2 lymphnodes,35IRMT,6 chemo
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#60328 02-23-2007 04:21 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Paula, The tests are scheduled for Wednesday. That's the soonest they could get me in. It will be Wednesday morning so I'm hoping I'll hear something by a week from today. I kind of doubt it will be anything too definite though, since if he thinks it's cancr I'd imagine the next step is a biopsy. Yuck.
Fortunately, I am on a search committee for a faculty position at work and we're interviewing 5 candidates next week, along with all the other teaching, grading and committee meetings I have going on. This person we're hiring will be someone I work closely with for (hopefully) years and years, so I really want to give my full attention to the interview process and it will distract me some from thinking about the worst case here (and keep me hopeful about the future).
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#60329 02-23-2007 05:43 AM | Joined: Oct 2006 Posts: 160 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2006 Posts: 160 | Nellie, Want you to know I'm thinking of you. Always keep that hope for the future. We all have to. Sounds like you'll be keeping yourself busy. Try not to dwell too much on the scans until you hear what's actually going on. I know it's hard, been there myself, as alot of people here have. Wishing you a good report. Take care.... Linda
Dx3/20/06 SCC,BOT,1N Tx:5cycles Carbo/Taxol, Rad:35x, brachytherapy:6x, completed 7/24/06
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